An anonymous reader stumbled across my blog the other day and it brought tears to my eyes. This reader became a mom in September. Her dear son has Down syndrome. She read about the events surrounding Micah's diagnosis and was encouraged that her feelings were completely normal. I'm humbled and grateful that I could help. But there are so many others that I wonder about. What do they think when they come here and read about Micah's antics, and my struggles with issues?
To My Readers Who Are Looking For Answers:
I apologize for the fact that I have no more answers to give than all the other information out there that you've surely found so far. I know it was frustrating to me that I couldn't get answers. That's all I wanted - how long until he could do this, or when could I expect that? But in reality, they're right. There is no "given" with DS. For this I'm sorry.
Take my box of Kleenex. Here's my shoulder and a big hug.
I will tell you, however, that you've got a precious little life in your arms and that nothing will do more for that child than your love. Give that baby all the love that you can and fight for whatever you think is going to be best. Don't let therapists or doctors talk you into something that you're unsure of. Stand up, give voice, say what you want and push for it. It's your child that you're fighting for, and nobody knows that little one like you do.
The road will not be easy. Again, I'm sorry. You'll deal with red tape, and paperwork, and government. And these things shouldn't even be involved when all you want is help for your hcild. You'll battle stupidity, and ignorance, and sometimes even well meaning people that know not what they're talking about and instead of helping you they make you feel like an incompetent loser that should never have had kids. These are the worst. They just don't know. They can't understand anything outside their perfect little world and our kids don't fit into it, so neither does our parenting style. Ignore these people. Smile politely and turn the other cheek. You also have my permission to kick them in the shins if they persist.
But it's not all doom and gloom. I just wanted to get that out of the way before we moved on to the rest of the story. The part where I tell you that the love you have for your baby is nothing. Absolutely nothing. Next year? That love will multiply in ways that you can't imagine. And the year after? Again. And the year after that? You'll wonder how on earth your heart can live outside your chest and walk around the way it does.
That baby you have is full of love. The smiles, the hugs, the way he looks at you at any given time of the day. With those eyes that make your heart melt into a puddle and pool somewhere in your stomach, making your insides one huge queasy mess. The hands that lack fine motor skills and can't cut with scissors at the age of 5, but amaze you with the tenderness in each and every touch. The feet that still have difficulty walking at the age of 3 but know how to toddle to mom and hug her when she needs it most. The mouth that cannot talk but gives kisses liberally, making rainbows appear from thin air on cloudy days.
The people that will come into your life will be such a blessing. The therapist that is so creative in getting him to do exactly what she wants without him even knowing it. The friend that volunteers to babysit because she loves him as much as you do. The teacher that believes in him and pushes him to greatness. The doctor that believes in you as his mom and listens when you say something isn't right. And acts upon it. The kids at the park, the playground, at church and school. Oh, the kids. Every last one of them will take your child under it's wing and be personal best friends with him. This is most amazing of all. Your child will be accepted without question. Kids can be cruel with their unkind words, stares and pointing. But they'll also amaze you in their blindness to difference, their unconditional love of a peer, and their devotion to the gentlest child among them. Your child will be accepted and protected by the entire playground of students.
These people that you'd have never met before if you didn't have this wonderful child to introduce you to them. These people that you didn't even know existed, in this whole other world that you're now a part of. It's your world, and you'll find a community that reaches out and supports in love like nothing you've ever experienced before.
But the best thing that I can tell you is that you've got a blessing like no other. Your child will teach you thing about yourself that you never knew. Your child will teach you to see the good in others, to always give the benefit of the doubt, to love without condition. If only everyone had the unselfish love and undying happiness that our kids do, the world would be a better place. I know my home is because of the boy that lives in it.
You have so much to look forward to.
21 comments:
You are an ispiration!! All moms should listen to your words, whether or not they have a child with Downs.
This is why you are so awesome. You are leading by example and are so compassionate while doing it.
Beautiful. Simply beautiful.
Karen, you so eloquently say what is my heart. I know that so many people assume having a "special" child is an overwhelming challenge. Truth is, the good out weighs the bad. How fortunate for so many of us to have stumbled upon you and your family.
You amaze and humble me. You truly do. And I am so, so grateful that you have chosen to share the blessing that Micah is with the rest of us. Because of him, and your entire family, we are able to look at parts of a world we might not be familiar with and see beauty, strength and hope for the future of our own children.
When I grow up, I want to be the kind of mom you are.
I sent someone over to read your blog who just had a DS niece. I am hoping her family comes back to read this. I hope this gives the family some peace in their hearts.
You are so amazing.
What a beautiful post. You are a wonderful Mom and Micah sounds like an amazing little boy!
Kimmy
Isn't it amazing? Prior to having our "special" kids, we would literally get sick with the thought of having such a child. It was one of our worst nightmares. And now? They are one of our biggest blessings. I wish more moms to be realized that, but until you live it, you just can't.
your blog is so touching and inspiring. you are a fantastic mama.
an amazing tribute to your son ...
and to you as his mom.
beautiful, honey.
I love your blog. I wish I would have found you in those first few weeks. Your wonderful! I'm so happy others out there are finding you.
This sort of thing is exactly why I love you.
karen...i love you more each time you post about my sweet little micah!! i'm not sure u know, but i had a bro that had CP, who passed away when i was 5 and he was almost 4 of complications with pneumonia and his many other birth defects. anyway, even as a kid, i knew there were stupid peeps...and i would tell them to quit staring at my bro. it doesn't take a genius to see that God picks a perfect place for a perfect kid and the 'stare-ers'' are not that home. so...u can kick them in the knees, and i will beat them while they are down on the ground, how does that sound?
Wow - Karen this was one of the loveliest things you've ever written - bravo!
I am one of the readers that march of dimes sent to your blog. Actually I am the new grandma. Our little Lindsey will be 2 weeks old Tuesday. I will visit your blog daily. Thanks for being here for us newbies, Oh yea and the Kleenex and hugs.
You never cease to amaze me. You're so wonderful...and so is Micah and the rest of your family.
K, Beautiful letter, your compassion is showing again ;-)
However, you forgot to tell her that her little baby will wrap total strangers around his/her finger and have them holding their breath with the struggles and crying tears of joys with the triumphs. A baby is a blessing, a gift. But a baby with any challenge is like a direct link-- and angel you get to hold in your arms.
That was beautiful! Thank you for putting this out there for all mothers (and fathers) to see.
So well said - every parent who receives a diagnosis for their child should read this! Actually would you mind if I forwarded this on to someone who emailed me today? I think you said things so much better than I could have!
Gorgeous post. I'm saving it and will probably link to it sometime soon...
What a beautiful, beautiful letter.
While my child is not a Downs Syndrome child, or even really a special needs child... she is different, (she was born without fingers due to ABS) and this letter really touched me.
Thank you so much for sharing it.
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